Recovering from bladder cancer

[Westminster59]

Hi all my name is Robert, and during September of 2013 l was diagnosed with bladder cancer type 3,1/2 and that after I had chemotherapy l would be operated on to remove my bladder, prostrate and a part of my bowl for bladder reconstruction. I was lucky as the person who informed me of my devastating news was none other then the brilliant surgeon Mr Mathew Perry, who went through in great detail what would happen to me in the forthcoming months. The operation took place at St George's hospital in tooting on the 4th March 2015. The operation took 16 hours! And my recovery went relatively well, and I was home within 10 days, however this caused problems and l returned to St George's with and infection. Today l live a normal life and do all the things I did before the operation and can withhold going to the toilet for up to 5 hours, yes it's true, so don't despair, it will come within a matter of months. During the night I  found it better to wear ether pads or a bag, this enable me to have a good nights sleep. The down side to this operation is be prepared that you may not have an active sex as you once had! they say that Viagra can work? But unfortunately not for me.  I hope that my experience will dispel all the negative thoughts you may be feeling at this moment in time, as you will have a fulfilling active life ahead.

Best wishes Robert "westminster59

[Rossi68]

Good to hear you doing so well Robert...wow amazing 5 hours  before emptying... After op I remember thinking I was worse than I was before op and honestly thought I'd never be back  outside again...5 years on and I know you get there eventually

[hotoz57]

Thanks Robert ,good to know my leaking waterworks should clear up eventually,if it was a plumbing job i wouldnt have paid them. Not too happy with the viagra thing as i was relying on it to do the job.

[Westminster59 in reply to hotoz57]

Don't worry about the Viagra, it may work perfectly well on you, the good thing though is l still have have the full sensation of a climax, so not all bad.

[briansices1945]

Hi Robert,I had stage 2 Bladder cancer diagnosed in february 2011 and after initial "Scrapes"to remove the tumour in West Suffolk Hospital was advised to have Chemo followed by Bladder removal.I had the Op in July 2011 in Addenbrookes and was given a choice of stoma /bag or rebuilt bladder.I went for the slightly easier option of Stoma/bag.After getting used to correct fitting of the bag,which took several months I now have no leakage at all and instead of connecting to a night bag I get up once a night to drain off bag and in my case this works fine,haven't tried Viagra but sensations are still there but as expected with prostrate gone nothing else to go with them.But on the plus side I am still clear 5 years on and 70 years old so thanks Surgeon Mr Bill Turner and the team  who spent 10 hours sorting me out

All the best,

Brian "Briansices"

[Westminster59 in reply to briansices1945]

Hi Brian, in some ways I'm glad l was offered the reconstruction of a new bladder, but as a result of the operation I now super from lymphedema in the right leg, but that's a small price to pay. Live long and be happy Brian.

[Westminster59 in reply to Westminster59]

Ps I grew up in your part of the world in Haverhill!

[brimas in reply to briansices1945]

I did not know you could take Viagra when bladder and prostate as been removed my husband had both rem in oct 2014 age 70 now took time getting used to bag had trouble sticking use tapes now and fine just trying to find insurance for spain and going on plane with bag husband a bit worried but you have to do it

[Gemjon]

My hubby had bladder and prostate removed in 2007 @the age of 31 he had no choice but to have a stoma as the surgeon could not guarantee there was no cancerous cells in the tubing. He uses a night bag so he gets a quality sleep and has never so far had any problems with erections or sensations..everything fine although just having him still with me is the bonus and the main thing.  He does have probs with minor leakage but does seek advice with stoma nurses for different bags. 

All these years on and cancer free so far so couldn't be happier🤗

[brimas in reply to Gemjon]

same here but my husband is fit 70 and I am glad hes here we had lots of trouble with bags not sticking and leaking but got it sorted in the end it will be three years in oct for my husband hoping for hol in spain if we can sort insurance out hes a bit worried about going on plane with bag but you have to do it

[car2com]

Hi Robert, good to hear your story, I had my bladder and prostate removed in 2012. I now have an inner Indiana reservoir pouch that they constructed for me and I drain it every 4-5 hours. Problem is at night,  I get up twice to drain, you mentioned a bag, what do you mean? About to try Viagra, hope it works, penile injections not too happy with.

[Westminster59 in reply to car2com]

Hi Car2com, l ment that l wear a Hollister incontinent bag during the night, which is connected to an Inview silicone sheath  that is connected to the penis, this  can be purchased through  B.Braun Medical Limited.

[car2com in reply to Westminster59]

I have a stoma, don t think that ll work for me, btw my name is Carlo and i m from Montreal, Canada.

[Larry_HN]

Robert, thanks for sharing your story, I'm just at the start of my journey waiting to go in for my "scrape". Nice to know there is life after BC. Best of luck going forward.

[Westminster59 in reply to Larry_HN]

Hi Larry,

it's not a nice time for you and your family at the moment, but remember you will live and in the not to distant future,  you will start living to the full once again.

Good luck in the next few months

[Gareth_G]

Hi Robert

Good to hear your story. I had all the symptoms of bladder cancer back in July 2014. I was finally diagnosed with Stage 3 muscle invasive bladder cancer last December 2015.

I am 56 yo, and i had 4 sessions of chemo, starting in Feb 16. But then i had a heart attack early March. Since they put a stent in, i feel fit and well. I am now going in for a bladder and prostrate removal on the 24th May, i too am having a Neo Bladder reconstruction. So it is reassuring to her your story.

Hope you are well,,,, and thanks for your post

Regards  Gareth

[Westminster59]

Hi Gareth, 

     sorry to hear of what has happened to you over the last year, but pleased to hear your new life will begin again after the 24th May!  You will feel weak after the operation, and feel pain in your neck, as the operation is done with you upside down but hopefully you will recover relatively quickly, as l did.  The other main issues after is that you will have to wear a Hollister incontinace bag after the operation. This is to allow the new reconstruction of your bladder to heal, you will also have to wear a pad during the day, but only for a few months. I'm 56 as well and enjoying my life to the full. Good luck Gareth, and please don't hesitate to contact me again if you need any questions answered or reassurance .

Regards

Robert

[brimas]

do you have the bag on then

[Westminster59]

Hi Brimas, no I don't use an incontinace bag during the day, as I use the toilet like every one else. The bag is only used during the night which l find more convenient to me, but you can set an alarm clock during the night and use the toilet instead .

[westseajoe]

good for you Robert- wow that was alot to go through- i bet your positive attitude had lots to do with your fine recovery....i am 70 and had my first 2 bladder surgeries in 2012. Had so many inspections since then followed by round of 3 BCG infusions...each time the Dr says it looks good- so i go on with my life! Bravo to you